Purpose: Gliomas are primary brain tumors with a life-limiting course of disease, and the last weeks of life are often characterized by neurological deficits that affect communication and personality. End-of-life treatment in this patient group therefore requires specific approaches. To date, little data is available on patients’ and caregivers’ needs and experiences in the last phase of the disease.
Methods: In this observational study, relatives of patients treated at the University Hospital Zurich, Switzerland and deceased 2015–2017 due to glioma progression were contacted to complete a structured questionnaire assessing caregivers experience within the last weeks of the disease.
Results: The survey was sent to 120 relatives of deceased patients with a glioma (WHO grades II–IV) (median patient age: 62 years; 73.8% male). Forty-three questionnaires were returned (37.7%). Approximately half of the patients were taken care of at home in the last 4 weeks of the disease, mainly with the assistance of in-home nursing care, of which eventually 14 patients (63.6%) died at home. While caregivers reported high satisfaction with medical and nursing care, psychological support was rated average to poor on a 10-point scale. Free comment fields were used widely, revealing open questions and needs of the relatives.
Conclusions: This study illustrates the need for a more patient-centered end-of-life care including higher psychological support mechanisms, and a higher inclusion and consideration of relatives and caregivers into the care focus. Earlier discussion of end-of-life preferences could prevent hospitalizations in the last phase of life and could improve patients’ and caregivers’ quality of life.

In the last decades, new technologies have improved the survival of patients affected by chronic illnesses. Among them, left ventricular assist device (LVAD) has represented a viable solution for patients with advanced heart failure (HF). Even though the LVAD prolongs life expectancy, patients’ vulnerability generally increases during follow up and patients’ request for the device withdrawal might occur. Such a request raises some ethical concerns in that it directly hastens the patient’s death. Hence, in order to assess the ethical acceptability of LVAD withdrawal, we analyse and examine an ethical argument, widely adopted in the literature, that we call the “descriptive approach”, which consists in giving a definition of life-sustaining treatment to evaluate the ethical acceptability of treatment withdrawal. Focusing attention on LVAD, we show criticisms of this perspective. Finally, we assess every patient’s request of LVAD withdrawal through a prescriptive approach, which finds its roots in the criterion of proportionality.

Patients with serious illnesses are often asked whether they would prioritize relief of pain and suffering or longevity if these 2 goals were to come into conflict. A significant majority state that they would prioritize relief of pain and suffering. However, it is difficult for clinicians and family caregivers to operationalize such preferences without knowing the limits of these preferences or how much time alive patients would be willing to sacrifice in the service of their palliative goals. We sought to quantify trade-offs between survival time and avoidance of intensive care near the end of life among seriously ill hospitalized patients.

Background: Family meetings are often conducted in palliative care, but there is no universal agreed or accepted model. A new model of Patient-Centered Family Meetings is proposed whereby the patient sets the agenda.
Aim: To seek palliative care clinicians' perceptions and experiences of Patient-Centered Family Meetings (“Meetings”) and their acceptability and feasibility in the inpatient specialist palliative care setting.
Design: A qualitative study used semistructured interviews. Theoretical and procedural direction was taken from grounded theory with thematic content analysis using the constant comparative method.
Setting/Participants: Interviews were conducted with clinicians (n = 10) at the intervention site who had participated in a Meeting.
Results: Four themes were identified: (1) a patient-set agenda gives patients a “voice”; (2) a patient-set agenda and the Meeting model enhances clinicians' understanding of patients and families; (3) the Meeting model was perceived to be acceptable; and (4) the Meeting model was perceived to be only feasible for selected patients.
Conclusion: Clinicians perceived that a patient-set meeting agenda with defined questions enhanced their knowledge of the patient's issues and their understanding of the patient and their family's needs. The patients' most important issues often differed from the clinicians' expectations of what might be important to individual patients. There were contrasting views about the acceptability and feasibility of these Meetings as standard practice due to clinician time constraints and the Meeting not being required or relevant to all patients. Given the perceived benefits, the identification of patients and families who would most benefit is an important research priority.

PURPOSE: Opportunities for advance care planning (ACP) discussions continue to be missed despite the demonstrated benefit of such conversations. This is in part because of a poor understanding of patient preferences. We aimed to determine oncology patients’ preferences surrounding ACP with a focus on the choice of which health care providers to have the conversation with and the timing of conversations.
METHODS: cross-sectional 19-question survey of surgical and medical oncology patients in a tertiary care hospital was conducted that assessed knowledge, experience, and preferences surrounding ACP. Quantitative variables were reported with descriptive statistics, and a coding structure was developed to analyze qualitative data.
RESULTS: Two hundred patients were surveyed. Only 24% of patients reported previously having ACP discussions with their physicians despite 82.5% reporting a wish to do so. Patients felt that these discussions were a priority for them (to alleviate familial guilt, maintain control, and prevent others’ values from guiding end-of-life care), but they reported that previous experiences with ACP had been neither comprehensive nor effective. Most patients (43.5%) preferred to have ACP discussions with their primary care providers (PCPs) compared with 7% preferring their surgeon and 5.5% preferring their oncologist. Trust and familiarity with PCPs arose as the dominant theme underlying this selection. Most patients (94%) preferred to have ACP discussions early, with 45% wishing such a discussion had been initiated before their cancer diagnosis.
CONCLUSION: Patients with cancer prefer to have ACP discussions with their PCPs and prefer to do so early in their disease course.

Purpose: Do-not-resuscitate (DNR) decision-making in severely ill patients presents many difficult medical, ethical, and legal challenges. The primary aim of this study was to explore cancer patients’ and health care professionals’ attitudes regarding DNR decision-making authority and timing of the decision.
Methods: This study was a questionnaire survey among Danish cancer patients and their attending physicians and nurses in an oncology outpatient setting. Potential differences between patients’, physicians’, and nurses’ answers to the questionnaire were analyzed using Fisher’s exact test.
Results: Responses from 904 patients, 59 physicians, and 160 nurses were analyzed. The majority in all three groups agreed that DNR decisions should be made in collaboration between physician and patient. However, one-third of the patients answered that the patient alone should make the decision regarding DNR, which contrasts with the physicians’ and nurses’ attitudes, 0% and 6% pointing to the patient as sole decision-maker, respectively. In case of disagreement between patient and physician, a majority of both patients (66%) and physicians (86%) suggested themselves as the ultimate decision-maker. Additionally, 43% of patients but only 19% of physicians preferred the DNR discussion being brought up early in the course of the disease.
Conclusions: With regard to the decisional role of patient vs. physician and the timing of the DNR discussion, we found a substantial discrepancy between the attitudes of cancer patients and physicians. This discrepancy calls for a greater awareness and discussion of this sensitive topic among both health care professionals and the public.

Background: Knowing the opinions of patients with Progressive Neurological Diseases (PNDs) and their family members on end-of-life care can help initiate communication and the drawing up of a care plan. The aim of this paper is to describe the creation and psychometric properties of the newly developed APND-EoLC questionnaire (the Attitudes of Patients with Progressive Neurological Disease to End of Life Care questionnaire).
Methods: Following focus group discussion, four main areas of interest were identified: patients’ and family members’ attitudes towards end-of-life care, factors influencing decisions about treatment to prolong patients’ life, concerns and fears regarding dying, and opinions on the system of care. The created questions were divided into domains based on factor analysis and psychometric properties were evaluated by sample of 209 patients with PND and 118 their family members.
Results: The final version of the scale contains a total of 28 questions divided into six domains (end-of-life control, keeping patients alive, trust in doctors/treatment, trust in social support, sense of suffering, and dependence/loss of control) and five individual questions determining views of the care system with specified response options. Construct validity was verified by confirmatory factor analysis for each evaluated area individually. Appropriate psychometric properties were identified in the questionnaire.
Conclusions: The APND-EoLC questionnaire can be recommended for use in both research and clinical practice.

Background: Understanding the factors that affect the congruence between preferred and actual place of death may help providers offer clients customized end-of-life care settings. Little is known about this congruence for cancer patients in receipt of home-based palliative care.
Objectives: This study aims to determine the congruence between preferred and actual place of death among cancer patients in home-based palliative care programs.
Design: A longitudinal prospective cohort study was conducted. Congruence between preferred and actual place of death was measured. Both univariate and multivariate analyses were used to assess the determinants of achieving a preferred place of death. From July 2010 to August 2012, a total of 290 caregivers were interviewed biweekly over the course of their palliative care trajectory from entry to the program and death.
Results: The overall congruence between preferred and actual place of death was 71.72%. Home was the most preferred place of death. The intensity of home-based nursing visits and hours of care from personal support workers (PSWs) increased the likelihood of achieving death in a preferred setting.
Conclusions: The provision of care by home-based nurse visits and PSWs contributed to achieving a greater congruence between preferred and actual place of death. This finding highlights the importance of formal care providers in signaling and executing the preferences of clients in receipt of home-based palliative care.

Purpose: Tai Chi is increasingly being used as a complimentary therapy in hospice care to help patients self-manage multiple and complex health needs. However, currently there is limited understanding of Tai Chi from patients’ perspective, including what participation in this mindfulness based movement (MBM) exercise means to their experiences of living with an advanced, incurable disease. The purpose of this study was to explore outpatients’ lived experiences of hospice-based Tai Chi in relation to mindfulness.
Methods: 19 participants (15 females; 4 males, aged between 50 and 91 years old) with a range of advanced, incurable diseases (cancer, COPD, pulmonary fibrosis, pulmonary arterial hypertension) who attended day therapy at a local hospice took part in Tai Chi sessions. Using a focused ethnographic approach, multi-methods including 17 semi-structured interviews (averaging 40 min), participant observations (equating to 200 h spent in the day therapy unit), and informal conversations were used to collect data over a 6 month period. Data was analysed using a thematic framework approach.
Results: Four main themes were constructed that demonstrated participants’ lived experiences of mindfulness during participation in hospice-based Tai Chi sessions. Main themes included: (1) mind-body respite; (2) being present with others; (3) tranquil and therapeutic atmosphere and; (4) physical limitations.
Conclusion: Tai Chi may be an important therapeutic strategy for helping patients with advanced, incurable disease experience mindfulness. The findings of this study support the use of MBM exercises such as Tai Chi as a non-pharmacological adjunct to conventional treatments within palliative care settings.

OBJECTIVES: Approximately 70% of Americans would prefer to die at home and avoid hospitalization or intensive care during the terminal phase of illness. Given the wish to die at home, it should follow the majority of Americans achieves their wish. However, recent data indicate ~60% of people dies away from home or hospice care. This article sets out to understand what makes it so difficult to attain what we aspire for in death and provide a starting point for change.
METHOD: The authors reviewed and analysed literature on elements which drive patients to continue treatment even though prospects are grim.
RESULTS: Six elements which combine into a system driving non-peaceful death were identified (western culture, healthcare system, pharmaceutical industry, professionals, family and loves ones, patients themselves) and complemented with three additional factors entrenched in us as humans which make the system particularly difficult to overcome ((rational) decision making, option framing, inability to change).
CONCLUSION: Dying in peace is easier said than done because the cards are stacked against us and we seem to remain unaware of the breadth and depth at which continuing treatment is ingrained in our system.

BACKGROUND: Caring for patients in the end-of-life is an emotionally and physically challenging task. Therefore, undergraduate nursing students (UNS) need opportunities to learn to care for the dying patient. This study aimed to describe UNS' experiences of caring for patients at end-of-life.
METHODS: Interviews with 16 UNS in their last semester of nursing education were conducted. Data were analyzed with a phenomenological approach.
RESULTS: The UNS created a professional relationship with the dying patient. It meant that when the patient was unable to speak for themselves, the UNS could still meet his/her wishes and needs. The UNS believed they could take responsibility for the patient who was no longer able to take responsibility for themselves. Meeting with the patient's family could be experienced with anxiousness but was dependent on the personal chemistry between the patient's family and the UNS.
CONCLUSION: The UNS creates a relationship with the patient and their family. To be knowledgeable about the patient's physical and psychosocial needs means that the UNS can support the patient in the end-of-life phase. Being close to the patient and the family results in an intensity of emotions in the care situation. The UNS can receive support from their colleagues during processing their emotions and creating an experience from their encounters with patients in end-of-life care.

OBJECTIVES: Goal concordant or congruent care involves having expressed wishes upheld. Yet, the preferred location for end-of-life care may be unaddressed. Caregiver-patient congruence between preferred and actual locations of care may influence the quality of life in bereavement. The study aimed to explore how the congruence between caregiver-patient preferred and actual locations of death influenced well-being in bereavement.
METHODS: Mixed methods were employed. In-depth in-person interviews were conducted with 108 bereaved caregivers of a hospice patient about 4 months after the death. An interview guide was used to collect quantitative and qualitative data: demographics, decision-making, Core Bereavement Items (CBI), Health Related Quality of Life, and perspectives on the end-of-life experiences. Data were analyzed with a convergent mixed methods one-phase process.
RESULTS: Patient preference-actual location congruence occurred for 53%; caregiver preference-actual location congruence occurred for 74%; caregiver-patient preference and location of death occurred for 48%. Participants who reported some type of incongruence demonstrated higher levels of distress, including more days of being physically and emotionally unwell and more intense bereavement symptoms. The Acute Separation subscale and CBI total scores demonstrated significant differences for participants who experienced incongruence compared with those who did not. Preference location congruence themes emerged: (1) caregiver-patient location congruence, (2) caregiver-patient location incongruence, and (3) location informed bereavement.
CONCLUSIONS: Congruence between a dying person's preferred and actual locations at death has been considered good care. There has been little focus on the reciprocity between caregiver-patient wishes. Discussing preferences about the place of end-stage care may not make location congruence possible, but it can foster shared understanding and support for caregivers' sense of coherence and well-being in bereavement.

PURPOSE: International health electives (IHEs) provide numerous educational benefits; potential harms are less well understood. One potential harm is trainee distress associated with increased patient death during IHEs. The purpose of this study was to explore residents' and fellows' IHE experiences with patient death.
METHOD: The authors used applied thematic analysis to explore residents' and fellows' IHE experiences with patient death. The Mayo International Health Program supports IHEs from all specialties across three Mayo Clinic sites. Data were collected and analyzed in two steps. First the authors collected, coded, and analyzed narrative reflections from 43 postrotation reports gathered in 2001-2017 and identified themes relating to experiences with patient death. Second, in 2016-2017 the authors conducted semistructured interviews with six previous participants to refine thematic analysis.
RESULTS: Participants described impacts of experiencing increased patient death and identified themes in two domains: difficult experiences with patient death and potential interventions to help residents process their experiences. They identified four themes illustrating why these experiences were difficult: lack of preparation for increased exposure to death, lack of closure, consequences of limited resources, and differences in cultural beliefs regarding death. While pretrip preparation for dealing with death was viewed as important, trainees identified support during and debriefing after IHEs as additional important interventions.
CONCLUSIONS: Given the popularity of IHEs, residency programs should consider the effect on trainees of increased exposure to patient death. Study findings can inform IHE preparation, support, and debriefing to minimize distress associated with witnessing patient deaths on IHEs.

Context: We previously developed the reintegration model to describe the adjustment process for individuals at the end of life. However, caregivers and loved ones also require significant support and must work to reimagine their relationship with one another.
Objectives: We sought to develop a dyadic version of the reintegration model that delineates key parts of the adjustment process that occur between the patient and another significant person rather than as two separate individuals.
Methods: We refined an initial conceptual model of this dyadic process with findings from a narrative literature review on spousal dyadic mutuality. We assessed emergent themes regarding dyadic adjustment from the literature for their fit with our original reintegration model and through consensus discussion, applied the findings to a final proposed conceptual model of dyadic reintegration at the end of life.
Results: Examples of dyadic adjustment in the literature relate to the comprehension, creative adaptation, and reintegration processes described in the original reintegration model. Evidence also supported three substantive additions in the new dyadic model: (1) shared understanding that the harmony of the dyad is interrupted; (2) consideration of the "we" (the dyad) and the "I" (the individual) in mutual reflection to create a shared narrative; and (3) emphasis on relationship as a factor impacting adjustment processes.
Conclusions: Available evidence supports interdependent relationships between members of dyads for the three adaptation processes of comprehension, creative adaptation, and reintegration in the model. This dyadic reintegration model can be useful in clinical practice to support dyads facing life-limiting illness.

OBJECTIVE: There is a lack of information about patients' attitudes towards and knowledge of resuscitation and advance care planning (ACP) in the palliative care unit (PCU). The aims of this study were to examine (a) patients' attitudes towards and knowledge of the topic of resuscitation, (b) patients' level of education about their illness and (c) their concept of ACP.
METHODS: This study used a qualitative methodology that involved semi-structured interviews with advanced cancer patients admitted to the PCU. Interviews were conducted during the first week after admission, recorded digitally and transcribed verbatim. Data were analysed through content analysis using NVivo 12.
RESULTS: Eighteen interviews revealed the following themes: (a) ambivalence regarding preference for or refusal of resuscitation, (b) patient confidence concerning their level of education, (c) lack of information about ACP and (d) positive perception of the stay in the PCU. The data showed that a high percentage of PCU patients desired resuscitation even though education about their illness was mostly perceived as good. Many patients did not receive information about ACP. Patients perceived the stay in the PCU positively.
CONCLUSION: The study results reveal that there is lack of knowledge about ACP and resuscitation in patients in the PCU.

BACKGROUND: People with heart failure report various symptoms and show a trajectory of periodic exacerbations and recoveries, where each exacerbation event may lead to death. Current clinical practice guidelines indicate the importance of discussing future care strategies with people with heart failure. Advance care planning (ACP) is the process of discussing an individual's future care plan according to their values and preferences, and involves the person with heart failure, their family members or surrogate decision-makers, and healthcare providers. Although it is shown that ACP may improve discussion about end-of-life care and documentation of an individual's preferences, the effects of ACP for people with heart failure are uncertain.
OBJECTIVES: To assess the effects of advance care planning (ACP) in people with heart failure compared to usual care strategies that do not have any components promoting ACP.
SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, CINAHL, Social Work Abstracts, and two clinical trials registers in October 2019. We checked the reference lists of included studies. There were no restrictions on language or publication status.
SELECTION CRITERIA: We included randomised controlled trials (RCTs) that compared ACP with usual care in people with heart failure. Trials could have parallel group, cluster-randomised, or cross-over designs. We included interventions that implemented ACP, such as discussing and considering values, wishes, life goals, and preferences for future medical care. The study participants comprised adults (18 years of age or older) with heart failure.
DATA COLLECTION AND ANALYSIS: Two review authors independently extracted outcome data from the included studies, and assessed their risk of bias. We contacted trial authors when we needed to obtain missing information.
MAIN RESULTS: We included nine RCTs (1242 participants and 426 surrogate decision-makers) in this review. The meta-analysis included seven studies (876 participants). Participants' mean ages ranged from 62 to 82 years, and 53% to 100% of the studies' participants were men. All included studies took place in the US or the UK. Only one study reported concordance between participants' preferences and end-of-life care, and it enrolled people with heart failure or renal disease. Owing to one study with small sample size, the effects of ACP on concordance between participants' preferences and end-of-life care were uncertain (risk ratio (RR) 1.19, 95% confidence interval (CI) 0.91 to 1.55; participants = 110; studies = 1; very low-quality evidence). It corresponded to an assumed risk of 625 per 1000 participants receiving usual care and a corresponding risk of 744 per 1000 (95% CI 569 to 969) for ACP. There was no evidence of a difference in quality of life between groups (standardised mean difference (SMD) 0.06, 95% CI -0.26 to 0.38; participants = 156; studies = 3; low-quality evidence). However, one study, which was not included in the meta-analysis, showed that the quality of life score improved by 14.86 points in the ACP group compared with 11.80 points in the usual care group. Completion of documentation by medical staff regarding discussions with participants about ACP processes may have increased (RR 1.68. 95% CI 1.23 to 2.29; participants = 92; studies = 2; low-quality evidence). This corresponded to an assumed risk of 489 per 1000 participants with usual care and a corresponding risk of 822 per 1000 (95% CI 602 to 1000) for ACP. One study, which was not included in the meta-analysis, also showed that ACP helped to improve documentation of the ACP process (hazard ratio (HR) 2.87, 95% CI 1.09 to 7.59; participants = 232). Three studies reported that implementation of ACP led to an improvement of participants' depression (SMD -0.58, 95% CI -0.82 to -0.34; participants = 278; studies = 3; low-quality evidence). We were uncertain about the effects of ACP on the quality of communication when compared to the usual care group (MD -0.40, 95% CI -1.61 to 0.81; participants = 9; studies = 1; very low-quality evidence). We also noted an increase in all-cause mortality in the ACP group (RR 1.32, 95% CI 1.04 to 1.67; participants = 795; studies = 5). The studies did not report participants' satisfaction with care/treatment and caregivers' satisfaction with care/treatment.
AUTHORS' CONCLUSIONS: ACP may help to increase documentation by medical staff regarding discussions with participants about ACP processes, and may improve an individual's depression. However, the quality of the evidence about these outcomes was low. The quality of the evidence for each outcome was low to very low due to the small number of studies and participants included in this review. Additionally, the follow-up periods and types of ACP intervention were varied. Therefore, further studies are needed to explore the effects of ACP that consider these differences carefully.

Background: The prevalence of undertreated cancer pain remains high. Suboptimal pain control affects quality of life and results in psychological and emotional distress. Barriers to adequate pain control include fear of opioid dependence and its side effects.
Aim: To investigate the attitudes and perceptions of morphine use in cancer pain in advanced cancer patients and their caregivers and to examine the influence of caregivers’ attitudes and perceptions on patients’ acceptance of morphine.
Design: Qualitative study involving semi-structured individual interviews transcribed verbatim and analyzed thematically.
Setting/Participants: A total of 18 adult opioid-naïve patients with advanced cancer and 13 caregivers (n = 31) were recruited at a private tertiary hospital via convenience sampling.
Results: Attitudes and perceptions of morphine were influenced by previous experiences. Prevalent themes were similar in both groups, including perceptions that morphine was a strong analgesic that reduced suffering, but associated with end-stage illness and dependence. Most participants were open to future morphine use for comfort and effective pain control. Trust in doctors’ recommendations was also an important factor. However, many preferred morphine as a last resort because of concerns about side effects and dependence, and the perception that morphine was only used at the terminal stage. Caregivers’ attitudes toward morphine did not affect patients’ acceptance of morphine use.
Conclusion: Most participants were open to future morphine use despite negative perceptions as they prioritized optimal pain control and reduction of suffering. Focused education programs addressing morphine misperceptions might increase patient and caregiver acceptance of opioid analgesics and improve cancer pain control.

Sense of control in end-of-life (EOL) care plays a critical role in the patient's well-being. However, little is known about the areas of control essential to patients and families at a specific time point in the illness trajectory: when patients stop curative treatments and are referred to hospice. This study qualitatively explored such areas. Sixteen admissions staff members from four hospice agencies were interviewed about their perceptions of areas in which patients and families worried about losing control by accepting hospice. The thematic analysis revealed four areas of control: changes to medical care, health care provider changes, use of life-sustaining treatments, and daily life. Participants of this study put a great emphasis on consistently communicating their willingness to honor patients' and families' control over their care decisions and lives. Future research should examine control in EOL care among diverse populations and effectiveness of hospice staff's strategies to address desire for control.